Data presented at this week’s SLEEP 2013 conference in Baltimore demonstrated that people with narcolepsy face significant personal health and economic burdens. The research, titled the Burden of Narcolepsy Disease (BOND) study and sponsored by Jazz Pharmaceuticals, found that patients with narcolepsy, with or without cataplexy, were more likely to suffer from a higher frequency of comorbidities such as mental illness, endocrine disorders, digestive disorders, and cardiovascular disease, and had more than twice the mean annual medical costs compared with the general population.
Additional results from two surveys presented at SLEEP characterize the impact that narcolepsy, as a currently misunderstood and underdiagnosed medical condition, has on patient care. The Awareness and Knowledge in Narcolepsy (AWAKEN) survey found that almost a quarter of 100 sleep specialists and more than half of 300 primary care physicians surveyed are not comfortable diagnosing narcolepsy. Results from the Patients’ Journeys to a Narcolepsy Diagnosis survey of physicians characterize the many challenges patients must overcome and indicate that patients often go through multiple misdiagnoses and physician visits before reaching an accurate narcolepsy diagnosis.
The Burden of Narcolepsy Disease (BOND) Study
The purpose of the BOND study was to examine comorbidities associated with narcolepsy and the burden of these diseases on patients. As part of the protocol for the study, researchers evaluated the Truven Health Analytics MarketScan Research Databases, which consist of more than 50 million patients across the United States, to identify a group of more than 9,000 narcolepsy patients each with at least five consecutive years of health care data, and matched these patients to more than 46,000 control patients.
The BOND study found:
– High rates of psychiatric comorbidity in narcolepsy: Patients with narcolepsy had significantly higher frequency of anxiety and mood disorders, and a higher rate of psychiatric medication usage compared with the non-narcolepsy population.
– High rates of medical comorbidity in narcolepsy: Narcolepsy patients had significantly higher frequencies of respiratory, musculoskeletal, endocrine, and circulatory conditions across the five-year period when compared with control subjects.
– Burden of illness and comorbidity in narcolepsy with cataplexy: Patients who have narcolepsy with cataplexy showed significantly higher rates of health care utilization and higher frequencies of sleep apnea, cardiovascular disease, and pulmonary conditions compared with the non-narcolepsy population.
– Health care utilization and costs in narcolepsy: Narcolepsy patients had approximately two-fold higher annual rates of hospital admissions and physician visits compared with control subjects.
The AWAKEN Survey: Physician Knowledge and Diagnosis of Narcolepsy
This online survey of 1,000 adults, 300 primary care physicians (PCPs), and 100 sleep specialists conducted by Jazz Pharmaceuticals and Harris Interactive found that physicians struggle with narcolepsy symptom recognition and diagnosis. Only 9% of PCPs and 42% of sleep specialists reported that they are comfortable diagnosing narcolepsy, and 22% of sleep specialists reported they are “not very or not at all comfortable” diagnosing the disorder.
Patients’ Journeys to a Narcolepsy Diagnosis
More than 75 expert neurologists, pulmonologists, psychiatrists, and other board certified sleep specialists who treat at least five narcolepsy patients per month completed a survey using data from the charts of 252 narcolepsy patients. The survey aimed to provide insight into the patient’s journey to diagnosis for narcolepsy. Jazz Pharmaceuticals conducted the survey and found that 60% of patients had been misdiagnosed with other disorders, such as depression, insomnia, and/or obstructive sleep apnea, before receiving the appropriate narcolepsy diagnosis; additionally, 67% of patients saw multiple providers prior to receiving a narcolepsy diagnosis.
“Approximately half of the patients living with narcolepsy go undiagnosed or are misdiagnosed, and many live with the disorder for 10 years before they receive a correct diagnosis,” said Russell Rosenberg, PhD, primary author of AWAKEN, director and chief scientist at NeuroTrial Research, and current chairman of the National Sleep Foundation. “Findings from the AWAKEN survey, and more research like this, will help us better understand current physician misperceptions that may contribute to a patient’s journey, and hopefully create more urgency around the need for enhanced narcolepsy screening and diagnosis.”